For Researchers

All participants completed a recruitment questionnaire when they joined the study, with the majority (97%) doing so between 2004 and 2009. Follow up questionnaires were subsequently sent approximately 2, 6, 9, 13, and 18 years after recruitment, with additional follow-up rounds planned. The questionnaires collect information on participant demographics, lifestyle, reproductive history, anthropometrics, medical history, family history of cancer, and other factors known or suspected to be linked to cancer risk.

The first and second follow-up questionnaires were administered on paper, achieving response rates of 99% and 97%, respectively. The third and forth questionnaires used a mixed format of online and paper surveys, with response rates of 96% and 83.5%, respectively. The fifth questionnaire used online surveys only, with a response rate of 59%.

92% of participants who completed the recruitment questionnaire also provided blood samples. These samples were processed and stored as buffy coat and plasma for genetic and biomarker studies. A small subset of participants also provided a second blood sample during the study.

We have collected urine samples for a subset of pre and post-menopausal women who were not taking oral or other hormonal contraceptives at the time of collection.

We have obtained whole genome genotyping chip data in nested case-control studies of incident breast and ovarian cancer. We have calculated polygenic risk scores (PRS) for cases and controls using this data.

We have performed assay measurements for a nested breast cancer case-control dataset for oestradiol, testosterone, C-peptide, prolactin, sex hormone binding globulin, estrone, estrone sulphate, progesterone, insulin-like growth factor-1, leptin, and anti-Müllerian hormone (AMH).

We have collected participant physical activity data (24 hour continuous 8-day triaxial 100Hz accelerometery) for a smaller subset of the Generations study. Data collection was suspended during the Covid-19 pandemic, but has restarted with a focus on participants with a previous diagnosis of breast cancer.

We have collected and analysed screening mammograms for a nested case-control study within the cohort. We are currently expanding this collection to include serial screening mammograms from 50,000 women of screening age in the cohort.

We identify cancer diagnoses and deaths through regular linkage with national cancer and mortality registries, respectively. Participant self-reports of cancer diagnoses and reports of deaths from family members provide additional information and help support the completeness and timeliness of our follow-up.

We collect pathology reports and paraffin-embedded tumour blocks for breast and ovarian cancers to create whole section H&Es, Tumour Microarrays (TMAs) and tissue cores for molecular assays. We also collect pathology reports and diagnostic H&E slides from benign breast diseases.